Post hemicolectomy/ gluten intolerance

In 2008, I had a right sided hemicolectomy. I also has a small portion of my small intestine that was attached to my colon removed in the surgery. I was given Dilaudid to help with the pain from the surgery. Things went less than smoothly and I ended up in the hospital on a Dilaudid drip through a PICC line from July 8-August 25. I then developed gastroparesis and narcotic bowel so was sent to UNC hospital to withdraw from the narcotic. The Klonodine that given to offset the effects of withdrawal crashed my BP and I ended up on a halter monitor for 6 weeks following a crash in BP to 49/47. It is not surprising that the months following were spent resting and in a state of severe fatigue and feeling badly. I began to make a comeback and regain my strength, however, I continued to experience what was diagnosed as IBS/C and required doses of MIralax 2-3 times a day in order to have a bowel movement at least twice per week. About a year later, I began experiencing severe fatigue and chronic nausea, both of which were attributed to the severe constipation. I later developed pain in my knees, wrists, toes, and fingers. I had re-occuring episodes of edema in my ankles, feet, thighs, and fingers. My salt levels were chronically low, despite using exorbitant amounts of salt in my diet, and my amylase and lipase were constantly elevated. I also had high B12 levels (which were very high but apparently not a cause for concern). I had low ferratin levels and went through IV Ferratin infusions to bump this level up. 6 months later, they were quite low again. After being told that my doctor was considering putting a pace maker into my intestines (I gradually became completely unable to have a bowel movement without the use of an enema, even after drinking an entire dose of GoLYTELY), I decided that I needed to figure something else out. My ANA was normal. My sedimentation rate normal. I tested negative for Lyme's Disease. I tested negative for Celiac. I decided to try eating gluten free despite the Celiac diagnosis. Within 3 days, I had a bowel movement on my own. Within 3 weeks, the swelling was down and the joint pain was almost gone. Here is my question. I still have some joint pain and still fall under the category of IBS/ C. My GI doctor does not believe in the GF diet following a negative celiac test (which he didn't administer because I did not have diarrhea). Has ANYONE out there had any sort of similar experience to me, or does anyone have thoughts on my story? I'm quite desperate to be able to put this all behind me and live a normal life again. I miss normal life and can't continue to pay the medical bills that I'm continuing to accrue!

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